Running: Chaz Davis determined not to let disease keep him down

To his friends, rivals and teammates, he's the same Chaz Davis — bright, affable, upbeat and always looking to the future.

The former Grafton High cross-country and track standout, a two-time T&G Super Teamer, remains in fine shape, still with that trademark finishing kick in him.

But there are no training methods for the challenges of college life Davis now faces. The University of Hartford sophomore has come to terms with the fact he'll more than likely never run in another intercollegiate race, a victim of a rare genetic disease contracted over the past year that has left him legally blind.

Davis, however, continues to thrive as a criminal justice major, posting grades worthy of the Dean's List and President's List, and his cross training and treadmill work keep him in what he calls "decent shape." If you call a 4:45 mile just decent shape.

"I don't know what I would've done if this happened to me when I was 20 years old," said his father, Marq Davis. "I've got a son that has inspired me. He's a strong kid — a lot of people would go, 'Woe is me,' and that would go on for another 5-10 years.

"He has gotten out in front of this challenge. He's an amazing kid, and I'm so proud of him."

And he also gets by with a little help from his friends. Most of his six-man suite at Hartford includes track teammates, including junior Bryan Quitadamo, his former SWCL rival at Auburn and a close friend since freshman year of high school.

"Bryan's been great," said Audrey Davis, Chaz's mom. "The guys didn't know what to expect because he didn't want to share a lot at first. He's been a great friend and has lent a lot of support to Charles."

"I look at him and see how he's coping with it," said Quitadamo, a junior media and broadcasting major who is taking the indoor and outdoor track seasons off to recover from injuries. "His attitude is always positive. It's amazing to me, considering what he's going through. I tell him anything he needs to let me know."

Last March, during his freshman year, Chaz called home to tell his parents something strange was going on with his right eye, and it seemed like "a flash from a camera that had gone off but the light wasn't going away."

Audrey brought him home for a doctor's appointment but was instructed to take him to the emergency room, and that wound up being a three-day stay. There, tests ruled out scary diagnoses — brain tumor, stroke, multiple sclerosis — but without a conclusion.

One specialist told the family that if it was inflamed optic nerves, they may get better on their own. A follow-up appointment was made with a specialist for June, but just before final exams the month before, Davis phoned home to report the left eye also became light sensitive.

An appointment was moved up at Tufts Medical Center in Boston with Dr. Thomas Hedges, who determined Davis' condition fit the description of Leber's hereditary optic neuropathy, a rare mitochondrial disorder passed from mother to offspring. Blood was drawn for testing, which took several weeks for the diagnosis to be confirmed.

LHON typically affects males in their late teens to early adulthood, affecting one eye acutely, then the second eye could take up to six months to a year to "bottom out."

"It's a disorder that doesn't affect many people," Davis said, noting about 100 people are diagnosed in the U.S. each year.

He struggled to finish the semester, yet again made the Dean's List. After finals, Davis returned to his summer job on the grounds crew at Pleasant Valley Country Club but soon found he could no longer mow the greens. In July, he handed over his car keys to his mom, then went to Atlanta to see Dr. Nancy Newman, an expert on LHON at Emory University.

There is no cure, though Davis is taking a supplement idebenone, which can help weather some effects of LHON. Audrey notes there is a chance 17-year-old brother Austin also could contract the disease, though slim.

Today, Davis can make out shapes and colors with "pretty decent" peripheral vision, but his central vision is affected to the point he can't make out faces. He usually gets around campus without the use of a stick, refusing to call it a cane. "I think of a cane as what old people use," he said. "I'm all right without it for now."

Students on campus are hired to read to Davis, which he takes in with a digital recorder. He has use of a special television monitor which enhances images and magnifies, and he had special audio software downloaded on his laptop which also helps him with exams. He takes some exams electronically in a separate location and others orally.

The faculty has been very cooperative. "For the most part, they're understanding — they've been very willing to help," he said.

Late in the summer, the Mass. Commission for the Blind provided various instruments to help Davis, but suggested he may want to spend more time learning how to use them before returning to school. He would have none of that, but is ever so appreciative of the commission's help.

"They've supplied me with all the technology, the magnificent devices I have now, which has pretty much allowed me to stay in school," Davis said.

The result? His best grade-point average yet, a 3.77. "I decided to put all my energy into doing well in school," he said.

Despite deteriorating depth perception, Davis kept training with the Hartford's cross-country team last fall. He decided he'd compete in a race at Central Connecticut State, a 5K event. But just after the midway point, there was a sudden downhill, too tough for Davis to make an adjustment. It was disheartening when he fell, a sign his college race days may be over. But in character, he popped up and finished the race.

"I see my friends and how well they've done," he said. "I'm looking forward to getting back into running."

Now that he's getting adjusted to a new level of sight, his vision into the future includes getting involved in running programs for the handicapped, hoping to run the Boston Marathon someday, and possibly venturing into the Paralympics.

For competitions on the road, Davis will need a guide, one who can keep up with him, definitely not an easy task. There's a good chance a former rival may be available.

"Yeah, I'd be willing," Quitadamo said, "if it came down to that."

Fundraising effort

Raising funds for LHON research is in its infant stages, through the United Mitochondrial Disease Foundation (www.umdf.org). The Davis family is active in the fundraising effort. Chaz's fundraising page is at stayclassy.org/fundraise?fcid=298295 — definitely a worthwhile address to cut and paste.

"I'm very hopeful that something will happen in his lifetime," Marq Davis said.